Sat 28 Jan 2017
Last month, during each of the eight evenings of the Jewish festival of Chanukah, we lit the celebratory candles and, as a family, sang the traditional song of Mo'atzur.
It's a song with a tune that sounds not unlike a Christmas Carol but each verse describes a different episode of Jewish history in which, as the saying goes, 'they tried to kill, we survived, let's eat'.
The final verse picks up the story of Chanukah and, referring to the part of the story where the Jewish people survived against the much more numerous Greek army and managed to keep the Temple Menorah alight for eight days instead of the expected one day, contains the line 'who performed miracles for his beloved' which translates from the Hebrew 'na'aseh nes lashoshanim'.
Given that Little S's name is Shoshana, for us these words take on a much more poignant reading, that God 'performs miracles for Shoshanas'.
Little S knows that her name is in the words of Mo'atzur and gets excited whenever we get to the final verse, smiling and dabbing as her name is sung out!
With the operation postponed from early December until this coming Tuesday, we were given eight opportunities that we would not otherwise have had to sing for miracles for Little S.
And it feels like we might need all of the miracles we can get - I'm scared.
-------------------
This evening I watched Avengers Age of Ultron with Little S's brother J - a movie about superheroes overcoming impossible odds to save themselves and the world whilst shrugging off injuries that would incapacitate or kill the vast majority of people.
Sound familiar?
Little S has been surviving and thriving against the odds for almost six years now - where Captain America has his vibranium shield and Thor has his hammer Mjolnir, Little S has her magic heart.
Well she's about to face a stern test over the coming days and weeks - I have hope and confidence that her courage, fortitude and sheer bloody mindedness will carry her through and that she and her magic heart will be stronger as a result.
But it's not going to be easy.
And even if everything goes as well as it possibly could, she not going to like it one bit.
--------------------
Assuming that the operation doesn't get cancelled, the days and weeks ahead are going to be tough for all of us, especially but not just for Little S.
As much as we could we've tried to just get on with life and be as normal as possible - it's always seemed to be a good strategy - it kept us and the kids on an even keel and stops you thinking too much about what could go wrong.
However, this week we're not going to be able to just carry on as normal, much as we might like to.
It's at times like this that we know that we'll be leaning heavily on our wonderful family and friends for support, both logistically and emotionally.
The logistics are important, of course they are, and the kids couldn't get on with their lives without everyone's help.
But the emotional support is incredible - to know that so many wonderful people are rooting for and praying for Little S provides a mental safety net and makes us remember that we are not on our own.
As Peter Gabriel and Kate Bush put it: 'when times get rough you can fall back on us - don't give up, don't give up'.
